Thursday, January 28, 2010

A Little of This and a Little of That

Yikes, I realized I haven’t been the most diligent blogger recently. There’s nothing like not posting to have people lose interest in your blog, or maybe it keeps people wondering…yeah I like that thought better. I know I owe you some posts about our trip to Disney and I will set out soon to finish up what I started writing on that waaaaaaaaay back in December. Can you believe that it is the nearing the end of January? Honestly, where does the time go?

In an effort to tell you a little about all of the things that we have or had going on in our lives I am going to list a little of this and a little of that.

Two weekends ago my in-laws came and celebrated the holidays, Jack’s birthday, and a three day weekend with us. Having visitors in our home highlights to Drew and I how much our life has changed in the last 22 months.

Lucy’s handicap parking permit arrived in the mail last weekend. When we first got her wheelchair I was adamant that we would not need a handicap permit. Don’t you just love it when life teaches you otherwise! I had a very big wake-up call in December when I was transferring Lucy from her car seat to her wheelchair. It was cold and windy and we were in a hurry to get to an appointment, I could not push her wheelchair between our van and the car parked next to me, there was not enough space between parking spots. I had to leave her wheelchair at the back of our van. I went to pick her up and in one quick move turned around to quickly set her in her wheelchair when I realized that her g-tube got caught on her car seat and had pulled the whole thing out! She was screaming, I felt awful, and I realized right then and there that this is why we need a handicap parking permit!

Megan lost her other top front tooth on Tuesday, it’s official Lucy has more teeth than Megan. Speaking of Megan, she had a mini meltdown this morning over her jeans being too tight. I know that kids grow at all different rates, just look at the differences in our kids, but I just bought her these jeans in November. SO in an effort to keep her wearing these jeans I showed her the infamous squat and stretch routine, I know all you ladies and some of you men out there know what I am talking about. Thankfully showing her these moves changed her mood and made her laugh. Do you think it will last through puberty, her mood not her jeans?

Sophie has been busy playing and doing her usual packing for some kind of imaginary vacation. I think that this week she has been packing to goto Dinoland. She does this kind of pretend packing so much that we are programmed to automatically look in every tote bag, suit case, backpack, plastic bag, doll stroller, cardboard box… for any missing items in our house because she never remembers what she has packed and where she packed it. This can lead to some crazy fun times in our house I tell ya! We are ready to send out a search party for our cable/television remote control, it has been missing for almost a month.

Jack has to memorize his multiplication facts all the way up to twelve. I feel like he and I are speaking in some sort of secret code as I am constantly asking him what something times something equals. He has also been reading some pretty great novels that he is passing on to me to read, we love a good read!

Drew and I went out on a date Saturday night. Yes, you read correctly Drew and I and NOT Lucy too went out for dinner and a movie. When I say dinner, I mean that in the loosest sense of the word, we went to California Tortilla for dinner where he treated me to the 2010 Burrito Fiesta meal for only $5. We laughed all the while we were eating because we blew off a reservation that Drew had made for us at a MUCH nicer restaurant so that we could go to a movie instead. We had all of twenty minutes to eat before our movie started so quick dining was imperative, not really any different from any other night of the week except we were alone, just the two of us and no Cheerios. We saw the new Harrison Ford movie Extraordinary Measures. It was based on a true story of a father who was in search of a treatment for Pompe Disease, a glycogen storage disease that Lucy was tested for early on. This movie hit home in many ways, we could relate to the passion of devoting your life to your child’s illness and wanting to do something! Our dear friends Alicia and Paul watched all of our kiddos for us, and all, yes all, did great. Lucy and Alicia bonded, she has the pictures to prove it. This is something that I know Alicia has been waiting for all of Lucy’s life! Slow and steady wins the race when it comes to Lucy. She is starting to warm up to those she has know most of her life. Don’t be offended if you just met her and she looks away from you like you are not even in the room, give her 22 months and you too could have her sit on your lap without crying.

I have not been snapping as many pictures recently, I don’t know why? I think that when I go to snap a picture and have to close one eye the other one automatically wants to shut too, this makes taking a good picture very difficult. Hopefully, I will get back into my routine of taking at least one a day soon. I have been working with the blog designer on redesigning or blog. I am excited to share this with you all when we are done.

The appointments are starting to pile up again, I will post more about those in an upcoming post.

Well, that’s a little of what has been going on in the Marlett house. Stay tuned for many more exciting adventures.

Oh, by the way, the carpet in Lucy’s room still stinks of Elecare even after blotting it up using an entire roll of Costco paper towels, spraying it with Lysol all purpose cleaner, using a Bissell steam clean carpet cleaner that we borrowed from our friends, and blotting some more with a damp rag. Ugh, I think I may need to call in the professionals.

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FOR THE LOVE OF LUCY RESEARCH FUND

In loving memory of Lucy Grace Marlett, the bravest five-year-old girl we know. Please help us to find a cure for Mitochondrial Disease by clicking on the image and donating to the "For the Love of Lucy Research Fund" established by her family and the UMDF. Thank you for your love and support!

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UNITED MITOCHONDRIAL DISEASE FOUNDATION

We are All the Marletts, a family of six trying to live life to its fullest! My husband and I fell in love at a young age and dreamed of being married, having a family, and growing old together… Even though our life is what we hoped it would be, we could never have imagined what GOD had in store for us along the way. Being parents to four remarkable kiddos has proven to be MORE in every way! When our youngest was born, although we didn’t know it right away, we were given the privilege and challenge of raising a “special child”, a medically complex child. Since starting this blog, Lucy has been diagnosed with Mitochondrial Disease, a progressive degenerative disease of energy metabolism. Even though this is a blog about our life as a family, I write often about Lucy’s medical issues. If you care to read about the trials and tribulations of raising four children, the joys and hardships of our family life, the emotional roller coaster ride that raising a medically complex child puts one on, and the love that pours from my heart onto the pages of this blog then…welcome!